Flashback from 2015
This was my update in 2015:
Dear Friends and Family,
I am so thankful for you all that have been supporting me through my fight with Lymphoma since 2013. I was diagnosed in May 2013 with Large Diffuse B Cell NH Lymphoma rising up out of what's called Follicular Low grade Lymphoma. I was treated at that time for 4 months with RCHOP which is the standard of care for that diagnosis. I quickly relapsed and by January of 2014 was re-diagnosed with it and started with another chemo protocol called RICE -- a fairly heavy-hitting chemo. I did not respond as well to that as I would have needed in order to be ready for a stem-cell transplant. I was then scheduled to do yet a third protocol -- RDHaP-- also very debilitating. Fast forward to June 2014 -- was hospitalized for a stem cell transplant -- New birthday July 3rd:)
Through all of the story above I withstood some debilitating treatments and you all stood with me. It is all a difficult memory and yet a sweet one when I think of how everyone has prayed and held me and my family up daily on this crazy journey.
We of course hoped that our journey with Lymphoma was in the past- but then this past August in the midst of a mini-renaissance that I was having -- I found out that I was relapsing and needed to get treatment ASAP. We were so discouraged with the options that we were being given...Really toxic bath chemo that the best response we could expect was about 30% and then an allogeneic bone marrow transplant that gave us an even less optimistic outcome -- and even if I could achieve remission could be a very detrimental strike on my quality of life. What we have found out since that time in August is ...well...a lot of things. 1. BOTH MY BROTHER BARRY AND SISTER AMY ARE PERFECT MATCHES!!! -- a person has a 1 in 4 chance of being a perfect match with their same parents siblings-- So WOW!!! At this point I hope I never have to have the bone marrow transplant...but it's definitely nice to know (on a lot of levels) that my siblings are both perfect matches with me!!! 2. There are some new treatments that may be able to help me achieve long-term remission (CURE) coming down the pike. 3. We are FULL OF HOPE-- when we were not given much -- and that is because GOD HAS A PLAN FOR ME -- TO GIVE ME A FUTURE AND A HOPE! Because ultimately GOD IS THE HEALER of my temporary tent but My hope is eternal.
Blessings and love to you all,
Linda
June 13, 2019
Dear friends and family
Well... A lot has changed since I wrote the above update in 2015...I am now sitting on this side of a full year 2015 of treatments and therapies that I received in Houston, Texas at MD Anderson Cancer Center. I received 3 clinical trials in that place of hope and healing. The first was an immunotherapy that was effective for 4 months until I relapsed. The second was a combination therapy that included an infusion once a month and very potent pill therapy that was difficult (and almost deadly) but was effective in putting me into enough remission where I was able to receive the long awaited allogeneic stem cell transplant with cells from my sister Amy. The following months and years have been healing and ultimately have led me to where I now am enjoying a full and vibrant life!
Unfortunately, my marriage did not make it through this tumultuous time. my story has a lot of twists and turns, but I think it is important to tell the whole thing. Cancer affects everyone in the family and my situation was a rough ride for all involved. That trauma has manifested in different ways. In some ways, I seem to have been the most resilient in my immediate family. Since the transplant, not only did my marriage fall apart, but also my daughter Rebekah has been diagnosed with an autoimmune disease - Lupus. I found myself here on this site today changing my name back to my maiden name. That effort has led me to writing these words as the beginning of a pilgrimage that I am embarking on.
One that tells my story. There's a lot to say.
Linda
